Are My Concerns Justified?

[will123]

Hi, my 12 yr old daughter has Asperger`s, and what is thought to be OCD .Over the last few weeks her obsessions have increased to the point where she cannot function. I have been trying to point out to various professiomals that the situation is getting worse on a daily basis, and needs urgent intervention(She now spends so much time washing her hands she barely has time to eat). She has lost significant weight, but everybody I spoke to seemed unconcerned and kept changing the criteria - "If her BMI goes below 16 we will worry." It did. "If it gets any lower we will worry." It did. "If she loses weight consistently we will worry." She has. and so it went on. After a referral to CAMHS she was offered CBT. Far too little, far too late, IMHO but what do I know?

After a really bad weekend, I called the out-of-hours GP who said nothing can be done because CAMHS are involved. On Monday the CPN came out and I said that this is not working and she is now dangerously underweight. I also called her SW and the AST and voiced my concerns.

That afternoon a psychiatrist came out and said that if she does not improve she will need to be admitted to hospital. I agreed, and actually gave him a list of specialist units which deal with these problems. The next day he came back and said a referral had been made to a unit (Acorn House, Maudsley) and we would try to get her in there ASAP.

So far so good, althuogh I think CAMHS need to stop operating in slow-mo and develop a sense of urgency - Good job they aren`t firefighters.

Anyway, because she will not comply and will not go willingly, he said that my consent will be needed, to which I agreed and said I understood. He then went on ( unnecessarily IMO) about the Mental Health Act and how if I did not agree, this would be invoked and I would lose any rights or input.

I went to great lengths to explain that I would rather we all work together, and don`t like threats, as it makes me feel dis-empowered and there is already an imbalance of power which makes me uncomfortable.

Away he went, promising to get back to us when he heard anything.

Yesterday I had a call from the AST worker, who said that they have a place available and could she come out to discuss details. Yes that would be great, I said, and waited for her arrival.

It turns out that the reason for her visit was not to discuss details but to give me a message from the psychiatrist that if I do not cooperate they will section her under the MHA.

I am seething about this - It is unnecessary, dis-empowering, and intimidating. Or that`s how I feel anyway.

In my experience, people who threaten without need are covering an inadequacy. I don`t want an inadequate psychiatrist looking after my daughter. Can I complain? Can I get a different psychiatrist assigned? Dare I complain? Am I over reacting? I just feel it is ironic that it was MY idea and they are trying to seize the initiative as if it was all their doing and I am trying to impede them. I feel terrified of losing my daughter because if I complain he will act out of spite.

[AppleCrumble]

Goodness, that must be infuriating!! Maybe write a letter, with a formal heading, signed etc etc... and say exactly what you have said here - the bits about you consenting, thinking it's an excellent idea, and how you really think it's needed immediately etc etc... and give it to them...

then they have written evidence! Photocopy it, and date it with when you gave it and to whom, and then get them to sign it to say they have received the letter (sign on both copies) - so that both you and them know that you consented, and that you want things done ASAP.

I agree, she does need to go in. Hope they stop being arses and get her help ASAP. Are they still faffing? Can you call A+E or NHS24 and say you really think she needs to go in ASAP and psychiatrists etc are faffing, and you're exrtremely worried etc, try to get someone to send someone out from NHS24 to look at her? COntacting NHS24 is sometimes a faster way of getting to help, although I'm not sure about mental health services, but worth a shot....?

Thinking of you xxxxx

[Pickle59]

(((Will123))) I'm really sorry to hear that you are having to go through all this.xx On reading and rereading your post, it strikes me, that though you have indeed had to push and push to get your daughter the help she reads right now, and the services that are meant to be helping you have been very very slow and tardy, it does seem now that they are finally putting something into place. They need your consent because of your daughters age............This is a legal requirement I think, and though it may seem like they are trying to take over control by reading you all the T & C's effectively, I think finally you are all coming from the same broad sheet, they are just being maybe quite officious about it and not very sensitive. Have you signed any consenting material yet........If you have then all should be ok and you will be involved all the way along, and if you haven't maybe this is why they are being a bit difficult, because as I read what you have written, what they are implying is that if you do not give consent then they will take it into their own hands under the Mental Health Act. I'm again so sorry you are having to go through all this. I hope it can all be cleared up soon and first and foremost your daughter can get the professional help that she so obviously needs, with you right by her side.xx

[will123]

Thanks for the replies. There is now no longer any delay, that isn`t the issue it is just that they threatened me when it was not necessary. To me it seems like somebody pointing a gun at my head and asking me to be their friend. I haven`t signed anything because I haven`t been asked to - As I said, it was my idea to do this, so it makes no sense to threaten me, and past experience tells me never to trust people like this.

[Kitsune]

You already said you agreed and that you consented- you told them you wanted to cooperate... hell, you did most of the legwork. This is insanity.

I can understand why you'd be fuming and feel disempowered because I would too.

I agree with Apple that you should write a headed letter and sign it with the date. At this point in time it is probably best to get everything you can in writing, including letters from the other people involved (e.g. psychs) and as much 'evidence' of where you stand and where they stand as possible so that if perchance things are going badly you have that evidence to fight your corner. It will also give you a sense of control.

From what I can gather this is just insanity, you've said you agree with them... so for them to go 'why aren't you co operating, we will take action if you don't' is a colossal example of them just not listening to you at all. What are they on auto pilot? Do they have a script that they have to read from because 99% of people don't comply?

you must be fuming and scared.

I don't think you're being irrational and I think that you are well within your rights to ask for another psychiatrist- perhaps you could contact the woman who came out to see you and the place your daughter would be going to ask them if they can see her or provide another psychiatrist?

I suppose what you have to bear in mind is that you don't want to endanger her place at the facility or slow down the process of getting her help... maybe you could voice this concern to the facility in question? Perhaps look for support online and with charities etc if you feel swamped and need help?

I hope that this all gets sorted out for you and that your daughter gets the help she needs soon.

[will123]

Thanks for your reply Kitsune and the advice. I asked for another psychiatrist and was told that this would happen, then yesterday got a phone call from a SW who said he was "approved" which I found out was a legal term to do with the MHA. He said sorry you have been threatened and they have taken legal advice and found that they cannot force treatment. (Again, I wasn`t refusing!??). He said a place was definitely booked and waiting and that they were arranging transport for Tuesday. I then had a phone call late yesterday afternoon from the unit themselves to say funding has not come through and there is no place available. I broke the news to my daughter, who by now was in pieces about going/not going - One of the worst things you can do to anyone on the autistic spectrum is to do the unexpected and give them uncertain messages. Anyway we then had an email to say funding was now through....... And another phone call to say it wasn`t. I have now sent out a blanket email - If anyone wants to see her, speak to me, or threaten me in any way they are to go through my solicitor, with whom I have made an appointment for Tuesday. I have also put in a formal complaint. This is all a result of asking for help from CAMHS, who are consistently useless and responsibility-averse, so insist on including at least 108 people in every decision. I would rather have Freddie Kruger examine me for piles than hand my dsaughter over to them - She would probably end up in the wrong place.

[ArtMatters]

I think you have a good reason to be concerned. This is one of the way the system fails horribly. They have all these loopholes. My advice would be to seek out some sort of community help. I don't know the job title exactly but when I have issues where I feel concerned in this type of way I usually talk to the women who run the harm reduction program I sometimes attend. The program is mostly for drug users and sex workers but also for women who are poor and having a hard time so I go there to get help with my disability application and whatnot. Anyways people like that whose job it is to advocate for people with mental or physical health issues or people who feel thwarted by the system.

( sorry I'm having my fibro word-remembering issues today so I don't know if I used all the right words or not..I feel like thwarted might not be the right word but I can't think of the word I'm thinking of lol..I guess it will do as a stand in.. I'm a bit out of it on account of my insomnia...hope that makes some sense though )

[will123]

I think you have a good reason to be concerned. This is one of the way the system fails horribly. They have all these loopholes. My advice would be to seek out some sort of community help. I don't know the job title exactly but when I have issues where I feel concerned in this type of way I usually talk to the women who run the harm reduction program I sometimes attend. The program is mostly for drug users and sex workers but also for women who are poor and having a hard time so I go there to get help with my disability application and whatnot. Anyways people like that whose job it is to advocate for people with mental or physical health issues or people who feel thwarted by the system.

( sorry I'm having my fibro word-remembering issues today so I don't know if I used all the right words or not..I feel like thwarted might not be the right word but I can't think of the word I'm thinking of lol..I guess it will do as a stand in.. I'm a bit out of it on account of my insomnia...hope that makes some sense though )

Thank you for the advice and yes I do understand what you mean - When I am under stress my vocabulary narrows to the point where I simply cannot articulate what I mean. As for advocacy, I have been trying to find one for the last 3 yrs, there is nothing down here, especially for Asperger`s. I remember several yrs ago contacting the NAS about help for my daughter and their one-word advice was "move". The intervening years have proved them right.

[ArtMatters]

I know what you mean it is a shame. Sometimes I feel like telling people to just come to Canada...although our system is still broken and flawed like the rest of them at least there are some decent resources if you are willing to search and fight for them...it sounds like in a lot of other places even that is hard to come by

People shouldn't have to move to access proper health care...especially in places that can hypothetically afford to offer something better if they were to make it a priority